Neurodiversity? Pop culture tries… and fails. But text, performance & images give my raw autistic reality…
Still driven to matter. Desperately. Almost 73. And I can’t unwind… busted springs, broken dancer in a jewel box. This piece isn’t an answer. It’s an accusation. And underneath? A terrified question I can’t stop asking.
{Music}
Intro
You’re listening to AutisticAF Out Loud. One voice. Raw. Real. Fiercely Neurodivergent.
One autistic elder’s truth. I’m Johnny Profane.
Content Note: language, psych ward experiences, childhood sexual & emotional abuse, intergenerational family harm + opinions & experiences of one autistic elder.
It’s everywhere.
Every where I go anyways.
I’m chatting with this young professional couple ahead of me in a line. Maybe, grad students…? This long, Walmart self-checkout is just brimming with fresh faces this August.
There’s an awkward break… like always in these in-line chats. Like we’re para-neighbors or something.
So… I’ve gotten used to a little stimming while I wait. In the silence, I arch my back backwards then I drop my head toward the floor… Breathe out, relax, straighten up, and…
They’re staring. Four eyes blinking through glasses. Two mouths open.
I… I… think a moment. Running through possible causes for those gawking faces. Then, I get it.
“Oh… Oh that.” I slip into my little canned moment. “Ya see, I’m autistic. I know. I don’t look like autistic. I’m old.” [Chuckle.] “But if I say… or do something… that seems, well, odd? Just let me know.”
You could see it instantly. I went from bizarre, possibly fiercesome alien to…
cute, harmless, possibly lovable, old oddball.
A blink or two… from each. The guy, in the designer hoodie, waves back and forth between himself and the young woman.
“Oh, we get it.” A bit more waving. “We love ‘Love on the Spectrum.’ Never miss it.”
To my credit, I manage a… thin smile, with a little mock hand-waving and a quiet, “Yeah, doggie.”
Shortly, they leave the store, waving back at me. And I wave back.
It’s more like they have a cute para-social crush on an idea… of autism.
But I’m thinking…
That show… and that couple’s genuine attempt to connect? They’re something… for now. I guess…
But I’ve been obsessing about stereotypes lately.
Like everybody suddenly knows the real me cuz they read an article on Thinking Person’s Guide to Autism…
TV viewers? None of them know me. It’s more like they have a cute para-social crush on an idea… of autism.
I try to bear in mind I may be going through a phase … [laffs]
But…
I am autistic + ADHD here. Turning 73, come June. I want you to know this reality… my personal reality. But shared by too many other neurodivergents.
I’ll never know what it means
to grow up without
sensory,
physical,
emotional, and
sexual trauma from…
family, teachers, playmates,
care-taking professionals,
the occasional stranger.
I’ll never know a life
without repeated psych ward stays.
So… it just may not be autism that blocks my dreams… Ya know?
Just stick a pin in that thought for a moment. We’ll circle back, after a bit… after I speak my piece…
“What…
would I be…
then…?”
Like most humans, I grapple with dreams…
I will never realize in this life… nearing its end. Dreams that wind my clock.
The biggest? The gut-wrenching need to matter… Less noble? My yearning for fame & recognition. I fear letting that dream go.
Cuz what… would I be… then…?
This piece isn’t an answer. It’s an accusation. And I can guaran-damn-tee you it’ll never stream on Netflix.
If this piece resonates for you, check out my collection.
I call it…
LETTING GO
Being born left its mark
That’s how I came to fear the dark…
Far back as i know
I fear letting go
Always scouting for that shortcut
I fear letting go
Careening towards god knows what
Fearing letting go
Dark lightning in my gut
From fear of letting go
Letting go
Letting go
God i need
To let go…
Everybody knows
I need to let go.
All life long
Drempt damned dreams
The kind that get you reborn,
To be big, to be… known.
As this long life, this dream… ends
I fear letting go
Cuz what
would I…
be…
then?
Been saying lately
Got to unwind…
Twist.
Got the heart… not the chops
I got to unwind
Unwind…
Twist.
Need a dream detox
Got to unwind
Un
Wind…
Twist.
Click…
Busted springs and
Broken dancer in a jewel box.
Good gawd almighty
I gots to unwind.
Sleepwalking in the moist dark night
A toddler memory, I feared a light
Shadowed crack under mommy’s door
Groans, cries, sighs… more
Then
.
.
.
Turning a knob on forbidden sight
Daddy’s rage, a parasite
Crawling… gnawing my insides
That night I first feared the light.
Black thunder in a winter storm
I fear the trembling light
Mantra falling in a mind at war
Terrified of that light
Fear that light
Fear that light
I fear that light
More than psych ward night
I fear that blinding light
Being born left its mark
That’s how I came to fear the dark…
But waking, startled, late in life
I came to cower…
at the light.
Ok. What I feel… what I experience inside?
Or what other autistic adults may feel?
It ain’t something you’ll ever binge on Netflix. No camera films what’s inside us.
So, unpin that thought I asked you to save… about blocked dreams. Let’s just circle back.
It ain’t autism. Or ADHD. Or any other neurological difference that blocks our dreams. Even those that are so different from yours.
I don’t believe ANY of this
7 decades of trauma…
familial disappointment…
social judgment…
failure…
pain…
Had anything to do
with my own inborn genetics…
nature…
Or Mommy’s fucking Tylenol.
But, and…
here’s the hope,
the meaning,
the good part…
Based on the joyful things
I could say,
did do,
did experience,
do share…
even against all the barriers
human culture has ever erected
For me… for all neurodivergents…
I can not imagine
the joy that
future neurodivergent kids
could have a shot at…
If “They” stop trying to “cure”
our natural behaviors
that annoy… or frighten… only Them.
And start supporting
the natures and gifts we do possess.
From the moment we come naked into this world.
I can NOT imagine what our kids
could say,
do,
experience…
in that future world.
Thank you so much for giving me your time, my friends.
And the space to sputter my rage into.
{Music}
CHAPTERS:
0:00 — Cold Open
0:27 — Intro / Content Note
0:57 — It’s Everywhere
5:16 — Letting Go (poem)
8:04 — Ok. What I feel… what I experience inside?
9:07 — But, and… Here’s the good part
10:16 — Thank you so much for giving me your time
More Spoken Word:
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every clock is a handgun pointed at my head, art, poetry, and raw neurodivergent truth. Thirteen pieces. One autistic life, unfiltered. Available on Amazon
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About This Work:
Johnny (Knapp) Profane Âû spoke at the UN World Autism Acceptance Day in 2022 about his illustrations rooted in neurodivergence. Published in Wordgathering (journal of disability poetry & literature), NeuroClastic, and Thinking Person’s Guide to Autism. In a former life, founding publisher of Unix World magazine. Living in rural Indiana in a trailer across the courtyard from his wife. With his 2 dogs, cat, and an unwavering commitment to raising hell, autistic style.
#ActuallyAutistic #SpokenWord #DisabilityPoetry #NeurodivergentArt #AuDHD #MentalHealthAwareness #AutisticAF #AutisticElder #LateAutismDiagnosis
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